Community Forum Archive

New Diagnosis at 25, Scared!! Need Support and Info!

Tue, 01/13/2004 - 17:06
I have been having ongoing sezuires for over two months, just got my insurance back, and have been hospitalized for 4 days while they tried to figure out what was going on. I have history of depression and was on xanax and valium for a number of years to control what they thought were horrible migraines & anxiety attacks, no tests were run at that time. I was blacking out back then. I went through a period where I was abusing speed and coke in my early 20s and supplementing it with my large RX of Benzos, so when I went for treatment I had withdrawal seizures. It has been 2 years sober and now I am having all of these strange hallucinations and twitches and go ito a trance like state. My face will hang like I had a stroke. All tests came out normal except the EEG showed some "Sharp stuff" and they said it has nothing to do with my substance abuse. I went recently for a 24 hr eeg. But know they are saying I am suffering post traumatic poststress disorfer and that I have bipolar.. I continue to have Complex Partial and Tonic Clonic.. I am on ever increasing dosages of Topamax, Dilantin, Klonopin, and Zoloft.. And I just want to scream!!! Is it possible that I am making this up and that I am going nuts?


RE: New Diagnosis at 25, but I am scared I am going Crazy!

Submitted by EpilepsyDotComEditor on Wed, 2004-01-07 - 13:28
I'm not a doctor, but it seems to me that if your EEG is abnormal, something physical is going on and you are not making it up! Are you being treated by doctors who are expert in epilepsy? If not, maybe you should ask for a referral. Take good care of yourself! Good luck.

RE: New Diagnosis at 25, but I am scared I am going Crazy!

Submitted by sabina78 on Fri, 2004-01-09 - 23:02
Update... yes I am being treated by a neurologist that specializes in epilepsy. The results of my 24 hour video eeg came back and I have a seizure disorder, complex partial seizures, so.. it is not all in my head, but she thinks that some may be triggered by post traumatic stress syndrome, so that I may be having I small mix of pseudoseizures as well, so it makes it difficult to treat. I have the seizures at home, or during my sleep, basically anywhere, anytime, random, but I can feel it coming like a flush or buzzy feeling.. and the weird thing is, during the 24 hour eeg, I don't remember having a seizure, I know that I had a major sleep disturbance where I felt like something stole my breath and I was fighting to wake up. but It showed sharp Stuff, not normal wavy lines. How do you just wake up with epilepsy? I thought you were born with it!

RE: New Diagnosis at 25, Scared!! Need Support and Info!

Submitted by USMALE on Mon, 2004-01-12 - 21:45 a good long loud healthy scream. Get it out of your system. You've got some work ahead of you. Live a normal life and don't let the idiots of the world tell you that you can't. I was diagnosed at the age of 14. It scared the crap out of me. Guess what? I'm 44 soon to be 45 and still living a normal life. You're only disabled if you allow this disability to take control. It can't run you unless you let it run rampant by not taking your meds, not getting enough sleep, not eating right, drinking, in short by not taking care of yourself. so please, Sabina, take care of yourself. You'll find that it's nowhere near as bad as it seems. Check out the webpage above. It should answer a lot of your questions. You need the Acrobat reader to view it, but they're still free to download if I'm not mistaken. If I am mistaken, (as if that could be possible), they're common on library computers.

RE: New Diagnosis at 25, Scared!! Need Support and Info!

Submitted by mommy2kyra on Tue, 2004-01-13 - 17:06
Hello. I too was diagnosed with a complex partial seizure disorder when I was in my mid-20s. I had apparently been having seizures for over 5 years before it was recognized. I was mistakenly diagnosed with panic disorder, and all that time thought I was just having panic attacks. It wasn't until I had a tonic-clonic seizure that the proper tests were done to identify what was going on with me. The tonic-clonic seizure seemed to come out of left field, and I was shocked.Looking back now, I can see it so clearly, and I feel like kicking myself! I had even gone to the hospital after my first complex partial seizure, but I was uninsured at the time and the doctor didn't do any tests. He wanted me to come back in a few days, but I didn't want to waste the money. Little did I know how much heartache and anxiety I could have prevented by getting an EEG!Anyway, after being diagnosed, I immediately lost my license to drive (another big surprise) and didn't get it back until my seizures were under control (after 2 years or so). Finding the right medication and dosage is often challenging. This can be very difficult, because your life goes on (work, school, relationships, whatever) and you feel like a zombie. It was a rough road.While things are sometimes tough, and there are particular challenges those with seizure disorders face, you learn to accept it and continue living your life. I finished college, and got my degree. I got married (to a wonderful man who was there with/for me through it all) and am now a SAHM to a beautiful healthy little girl. We are now going to try for another baby.One of the most invigorating and liberating things I've done in my life is learn all that I can about seizure disorders. I learned all about the brain and it's functions, in order to better understand what was happening. (I ended up getting my degree in psychology, so I did extensive studying of the brain.) Studying seizures really helped me to overcome my own negative emotions and pre-conceptions about epilepsy. I would also recommend contacting a local Epilepsy Foundation, as they are a great resource for information and support. They offer support groups, camps for youth, and seminars.I wish you the best of luck, I know it's a tough time. Just try not to wonder why this has happened and instead focus on what you can do to to improve your quality of life. Take care :)Heather

How old is ur lil girl now

Submitted by Justin on Sun, 2005-10-09 - 19:05
How old is ur lil girl now heather? Ive got a 9 month old. what a handful! Keeps my mind off negative things though. And thats priceless.

I now have 2 little girls

Submitted by mommy2kyra on Mon, 2005-10-10 - 14:09
My girls are 1-year and 3-years. A handful, for sure, but very sweet :) Heather

You're not going nuts. There

Submitted by tcameron on Sat, 2014-04-12 - 15:39
You're not going nuts. There are epileptic and non-epileptic seizures. They're both seizures. Some people have both conditions and not even realize it. Several antiseizure medications are also used for bipolar disorder and several other conditions, such as nonepileptic seizures. If your neurologist can't help you, it might be time to see an epileptologist. (A neurologist that specializes in Epilepsy). You could have some brain damage from your prior drug abuse, which might be causing your seizures. Every brain is different. I have some brain damage from several falls from hitting my head during different drop seizures. This is making my Epilepsy more severe, but it is still treatable. I take four different AEDs, but I still continue to have seizures every month. My sister-in-law takes one of my AEDs, Lamictal, for her bipolar disorder. She's not crazy. She has her masters degree and she works full-time at a high-paying job.

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